Thursday, November 10, 2011

Luke 12:6-7 "Are not five sparrows sold for two pennies? Yet not ONE of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows."

I decided to start a blog about our journey that we have been on the past 6 months...it has been a rocky yet joyful one and I know how many of you are praying for Jordan and I and our two little miracles. We can't thank you enough for the support and love that you've shown us, and hope this gives you a better insight to what's going on. The verse above (Luke 12:6-7) has been one that has stuck with me from the beginning of our journey...if God cares for the sparrows, and doesn't forget one, how could we ever doubt his love for US, his children, when He knows every thing about us, down to every hair on our head.

I'll start from the beginning....

In May of this past year we found out I was pregnant. We were beyond excited and couldn't wait to tell our family and loved ones about what the Lord was doing in our lives...

(photo taken the day we told our parents and siblings)

In August, we went for our very first ultrasound, excited to see the first picture of our baby. I wish I could have recorded what Jordan's face looked like the minute the ultrasound tech said, "So, yeah, there's 2 in there!". To be honest, I had a feeling that we were having more than one for a few months, and had even said to a few people that I thought so, and no one believed it ofcourse:) Jordan and I had always said to each other that we would love twins, and I remember before the ultrasound, I specifically asked the Lord that they would be twins. We were ecstatic, I was crying and Jordan had to pick his jaw up off of the floor a few times. I remember waiting for the doctor after the ultrasound and Jordan said something like "Well I guess the Lord really wants us to know He is in control and we aren't". We had had a very in depth discussion the night before of our plans after the baby came, how things would go, what we would do, etc. The Lord never fails to use whatever it takes to bring us back to Him and remind us that HE is in control! As I remember this story now, it gives me peace and comfort for what we're going through, knowing that from day 1, He has made it known that He has a plan and we don't need to worry about it.

That brings me to September...I went in for a routine ultrasound right before my sisters wedding in Oregon, and the doctor told me she didn't think there was anything to worry about, but that they saw Twin A was slightly bigger than Twin B, and A had more amniotic fluid than B did. She said I shouldn't be alarmed, that this happens quite frequently with twins, but she reccomended I go see a specialist to rule out anything serious. I was able to go to the wedding (Thank the Lord), but immediately after I got back, Jordan and I went to see a specialist at Albany Med. I was about 19 weeks at that point, and they diagnosed the twins with Twin to Twin Transfusion Syndrome, Stage 1. There are 4 stages to TTTS, 1 being the "best", but in most cases it progresses and it can become increasingly dangerous for one or both of the twins. In a nutshell, TTTS happens ONLY in identical twins that share a placenta. Because they share a placenta, they can have a risk of sharing blood vessels/arteries that are in that placenta, and getting an unequal distribution of nutrients and blood, causing the bigger twin to get more, and the smaller twin to get less, and in progressed cases, the smaller twin becomes "shrink wrapped" to the side of the uterine wall, much smaller and with much less amniotic fluid than the larger twin. This can cause major problems not only in utero but after birth for both of them.

We continued to see the specialist weekly for ultrasounds, praying every day that it would not progress and that the Lord would be growing them healthy and strong. Every time we went felt like a victory when they said that it was still in Stage 1, and it hadn't progressed. We were so thankful and just felt like if we could keep making it each week like this, it would be ok. We continued this until I was 23 weeks, and at that point our doctor recommended we go to the Children's Hospital of Philadelphia to see another specialist, that specializes in TTTS and other feltal complications with multiples. We thought, it couldn't hurt right? Let's go for an evaluation, it's better to have more opinions than just one.

So Tuesday of this week was our appointment at CHOP. After a 4/12 hour drive Monday night, we crashed in the hotel for the night and woke up for our first appointment at 9:00am. We met with a genetic counselor to go over family history etc, then had an Echo Cardiogram for each of the babies to check their hearts (lots of times in TTTS cases, the bigger twin can have heart problems due to too much blood pumping to them, so they were checking for this). We then had about a 3 1/2 hour ultrasound to check every part of anatomy for each of the baby girls, which was so fun and yet so uncomfortable. Who knew laying on your back when you have 30 extra lbs caused you to feel so lightheaded and nauseaus? :) Needless to say, we were so happy to see our little ones moving around so much so that the tech had a hard time getting the shots she needed due to their ridiculous cartwheels and flips. They take after their daddy for sure.

We were encouraged to see that they had each gained weight, with A weighing 1lb 8 ounces and B weighing 1lb 4 ounces! they both had all of their fingers and toes, their heartbeats were good, and they just looked so happy. B still had much less fluid around her than A, but she hadn't entered the stage of being stuck or "shrink wrapped" yet, she still seemed to have plenty of room to move around and enjoy kicking her sister. Dr. Johnson came in to the room, muttered a few things about the placenta and other medical terms to the tech, then left. We didn't really know what to think, and at this point our only knowledge was that they were still in Stage 1 of TTTS. We went back out to the waiting room until the doctor was ready to talk with us about their findings that day.

It was about 5:30pm at this point, and we were both exhausted emotionally and physically, and anxious to hear the possible good news the doctor had for us that everything looked the same to him and the twins TTTS still hadn't progressed. This is where the hard part comes in. Dr. Johnson started out by explaining TTTS to us in depth, and told us we didn't have it. Immediately I started crying, I think as more of a relief than anything. Could they have been wrong the whole time? Could our twins really be fine and we have nothing to worry about? After he continued explaining some things, I caught on that there was something else, something more serious and something the Lord would have to give us strength to hear. Dr. Johnson introduced us to something called Selective Intrauterine Growth Restriction (SIUGR), which is a fairly complicated syndrome that can look slightly like TTTS but it's very different. It happens in 10% of all identical twins, and stems from the fact that they share a placenta. Essentially, Baby A has about 75% of the placenta, and Baby B has the rest, due to where their umbilical cords connected to the placenta. Since B doesn't have much of the placenta, she is pretty much operating on "survival mode", using what she has in her body to sustain her heart and brain and extremeties. Randomly, a rush of blood will come through the placenta from Baby A (who has a normal amount of everything, and is not operating on survival mode), and send Baby B into a sort of adrenaline rush. The doctor told us that during these random transfers, it can cause brain injury to one or both. He also said that at any point, baby B, because she is operating on survival mode, could pass away in utero, and we would have no way of preventing it or knowing until our next ultrasound. There are 3 stages to SIUGR, and we are in Stage 3, which is the newest, most complicated, and hardest to predict the outcome for.

We begged the doctor to tell us something that we could do, there had to be something. The only option he gave us was to "selectively terminate" baby B in hopes that it would provide a better outcome for baby A. He said it was illegal in most states to do it after 24 weeks (which is what I am), but that he knew a doctor in Maryland that would do it. I was hysterical at this point, and Jordan spoke for both of us saying that was not on option for us. I think one of a mother's worst fears is having to choose between one of her children, and simply to hear it made me completely sick. I PRAYED for these two little miracles, the Lord said yes. Who am I to end one of their lives simply because a doctor tells me that it could POSSIBLY give the other one a better chance? That's God's place, not mine. HE is in control, and He has our days numbered, before we are even a thought.

The rest of the appointment was pretty much a blur, but we asked if there was anything else we could do...bedrest, surgery, anything. Nothing. We just have to wait. Continue to go to weekly ultrasounds and pray with our whole hearts that our baby girls hearts are still beating and they are still thriving. Dr. Johnson suggested that we deliver early, around 32 weeks. I will be given steroids for the girls to help them develop, and they will inevitably be in the NICU for a while, but this was his best suggestion that they would be strong enough to deliver, without giving the SIUGR more chance to progress. In about 30-50% of cases, brain injury can happen to one or both of the girls, specifically if one passes in utero. This wouldn't be evident until they were born and about 6 months, when we can visibly start to see how they are developing and responding to things.

The hardest news I have ever had to hear? Hands down. I feel sick, terrified, and anxious. But there is one common thing I am noticing in this story...at every event, at every piece of news we recieve, the Lord is saying "Wait on Me, trust in Me." Would I like a clear, difinitive diagnosis now? Ofcourse. But the Lord is requiring that we have more faith than we ever have, and for that I am thankful because HE is faithful. No matter what the outcome, He is still good, and we will still praise Him. But Oh God, please protect my little girls. Grow them healthy and strong and let us hold them and raise them to know You like we do. Let their lives be a living testimony of the miracles that only YOU are capable of, despite all other odds. Let their lives glorify you. Amen."Then I said, 'I will appeal to this, to the years of the right hand of the Most High. I will remember the deeds of the LORD; yes, I will remember your wonders of old. I will ponder all your work, and meditate on your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.'" Psalm 77 10:14

52 comments:

carolyn- you are an amazing mom already- i can only imagine how your heart must be breaking when you cant do anything to protect your babies but you are absolutely in the best hands with a God who is all powerful and in control. I will be praying for you and your little girls. hang in there!! -Kaitlin Snyder

Cair, reading about this journey you've been on and your faith throughout it all brings me to tears. I'm so blessed by you and will absolutely be lifting you all up in prayer as you continue to trust the Lord's plans for your lives. Love you, girl!

Carolyn, I'm a friend of Nancy. I have two beautiful twin sisters, as well as a father who is a twin, so this hits pretty close. While I'm crying as I write this, I cannot begin to imagine what you are feeling. Please know that I am going to be in serious prayer for you, your husband & your precious babies. God has you in the gentle palm of His hand. I know that God will be so glorified through this. Praying, praying, praying!

so glad danielle mentioned you so i can pray.sending hugs and many prayers to the father, may he hold you ever close. Psalm 57:1-2 Be merciful to me, O God, be merciful to me,for in you my soul takes refuge;in the shadow of your wings I will take refuge,till the storms of destruction pass by.I cry out to God Most High,to God who fulfills his purpose for me.

I saw your link on your sister's facebook photography page. I remember you both from SCS (I graduated in 2002). I am so sorry you are going through this but I will be praying that God continues to give you the strength you need to get through this. I'll also share this prayer request with my Bible study group.

Hi, I do not know you, but saw a post from Jason on his FB wall. I'm a mother of 3 year old twins and have had the blessing of experiencing a twin pregnancy. I never experienced what you are going through, but did have some complications in my pregnancy and thought that I was going to deliver too early. My twins were born 6 weeks early and were in the NICU for a couple weeks. Today they are both very active and healthy! Just wanted to let you know that my thoughts and prayers are with you as you walk this incredible journey!

Hello! I am a friend of Leah's through church! Sending much love and many prayers your way during this difficult and emotional time. God has very special plans for you and your family, and those two special little girls! God Bless!

Oh, honey... Just wanted you to know that I'm praying for you guys and your two little girls. I know God is in control and will give you what you need to handle this... but I also know this is the most difficult thing you've ever faced. My heart goes out to you and Jordan. ♥

Oh, honey... Just wanted you to know that I'm praying for you guys and your two little girls. I know God is in control and will give you what you need to handle this... but I also know this is the most difficult thing you've ever faced. My heart goes out to you and Jordan. ♥ (this is Emily Graham. Sorry about the previous comment and the way it posted)

Hey Cair, just wanted to let you know that we will definitely be praying for you and your babies. My baby girl turns 1 in a month and I can't imagine ever having to worry everyday for her life. God is in control-not the doctors. You all are showing amazing faith right now and God will reward you for that. Thank you for putting up this blog. We can all learn from this and a lot of prayers are going up for you now. God bless.

God is so good and so darn faithful. Not only does he support us directly, but rounds up the troops on our behalf. God specifically prompted me to pray for you the other day. Now that I read this I realized it was on Tuesday-which was clearly a day when you needed some extra support and comfort. I will continue to keep you in prayer (only I won't wait for a personal invitation next time!)

You don't know me, but I read your post from a friend of Nancy's. WOW, I'm 20 weeks pregnant myself with just one baby, please know I will be praying for you along the way. I saw two plaques the other day that I wanted to share with you... We've had some tough things happen over the last year and they are great reminders for me... one simply says: God doesn't give us what we can handle, He helps us handle what we are given! The other is: God didn't promise days without pain laughter without sorrow nor sun without rain but he did promise strength for the day comfort for the tears and light for the way.Cling tight to Him through this sister!

My name is Lindsey, and I am a friend of Kristin DiBlasi. She asked a group of girls for prayer for you, and I am one of those girls. I pray for a peace to settle into your heart that is inexplicable except through HIM. I pray that you can lean on our Father through your pregnancy and beyond. I pray for His will for your children. You are so brave for sharing your story. Thank you for sharing your heart, and know that we are behind you, loving and praying for you!

Jordan and Cair: The Lord is soo pleased by your faith!!! He has given you the wisdom, strength, faith, courage, and peace to get through this, and you are certainly using what He has given you! God is a good and faithful God. I will be praying for you every single night until those two precious, HEALTHY baby girls are born! And after! I cannott wait to meet them. =) We love you guys and you are such an example of great faith. The Lord is already being glorified through your family! <3

Jordan/Cair .. I've never know the Lord to be anything but faithful. He prescribes measurable grace for each situation.I Peter 5:10 He is the God of ALL Grace and He knows our needs. In a similar situation God gave us the name of our baby girl: Grace.... We will be praying for Jordan, you and the girls. Our hearts are with you.

I came across your blog via facebook from a friend of a friend. I just wanted to let you know that my thoughts and prayers are going out to you both as you experience the turbulence that these developments are bringing. You both are an INCREDIBLE testament of faith, and naturally with faith like yours, God's grace is working in you. Obviously you don't need me to tell you that! You have so many people who obviously love you so much, just by reading these comments. There are so many thoughts and prayers going out to you two, and for your two beautiful little girls to have the strength from God to keep fighting. <3 -Meghan O'Brien

Hello, I'm a friend of the Hastings family (Bob and Robin). I am praying for you. I also want you to know that you can use me as a resource if you want any medical jargon interpreted. I am at MGH/Harvard and am a pediatric neuroscientist and my PhD is in reproductive physiology. I was actually just at CHOP on Monday to visit our collaborators there- we study pediatric brain injury. You can reach me at bcostine@partners.org if you have any questions or want me to look anything up for you.

i am the grandmother of a beautiful 2 year old grandson. He had amniotic band syndrome and we were given no hope of survival. every time my daughter went to a doctor appointment she was told to terminate. we were sent to fetal care center in cincinatti, they were wonderful! she had fetal surgery to remove the bands from his umbilical cord. then she lost all of her fluid from the surgery. They said no baby ever survived more than 6 weeks without fluid, again she was told to terminate. Thank God for her obgyn! he put her in the hospital and she went 9 weeks without fluid. They said he would be deformed. He was'nt! they said he had no hopes for survival his lungs were to small.He was 2 lbs 7 oz with no hope!! Boy did he prove them worng! He is a happy healthy 2 1/2 year old! he has had surgery on his ankle from where the bands were. we are so blessed to have him! God has his own plans my daughter was so strong i think she surprised us all. She is a wonderful mother and you sound just like her! keep your faith!! everything will be fine!

You don't know me, and I don't know you, but please know that I am praying for you and your husband and your babies. I am so thankful that we serve a God who hears our cries and answers. May he give you a peace and a strength unlike anything you've ever experienced, through his Holy Spirit...

I'm a friend of your Aunt Nancy's, writing from Texas. I'm praising God for your faith and resolve to walk WITH Him through this. Dear Lord, give this young couple faith and strength to face the days and weeks ahead of them. Grant them rest and peace as they wait on you. And if it be your will, Lord, bring these two magnificent creations into this world that they may reach others with your powerful, saving love.

Warren Wiersbe said, "Trials work for us, not against us...God permits trials that He might build character into our lives. He can grow a mushroom overnight, but it takes many years - and many storms - to build a mighty oak."

Oh, Cair, I am in tears as I write...tears of sympathy and also tears of humble awe and encouragement by your faith and trusting that God truly is good and in control. It is so hard that we don't get to know all the details as we wait on our stories to unfold, but He is the author and perfector of our faith. He is writing your beautiful stories and He's got it in His loving hands. I will continue to pray for your hearts, your faith, and the precious lives of your little girls. I love you guys so much! Love, Lauren

Jeremiah 32:27 ~ I am the Lord, the God of all mankind. Is anything too hard for me?

I am so thankful Danielle pointed us to your blog. I am praying for you and your hubby, and those beautiful little girls growing inside of you. May the Lord's will be done, and may His healing hand be constantly upon all of you. xoxo

I am here through Danielle's blog and want you to know that I am praying for you and your girls. May God give you and your husband strength and peace as you wait on Him. Praying that God's healing hand would be on your girls and that He would help them to be healthy and grow and develop as they should. I have experienced complications in pregnancy as well and know the power of prayer. I hope you feel this from all of us who are reading your story, whether we know you or not.

Just came over here from Danielle's blog as well and I am so sorry to hear of your story but so encouraged by your faith and to see what God will do! I will pray for you, your husband and your two sweet girls!

I learned of your blog through Nate Loizeaux, and I wanted to say that I'm praying for you, and encouraged by your reliance on Scripture. What a beautiful testimony to God's goodness in your lives! I have a 7-m-old who was given a horrible diagnosis when I was at 25 weeks, and we were told repeatedly that she would die. God is great, and He spared her and has been helping her grow and flourish ever since! I will pray for your sweet girls. My blog is mrstalcott.blogspot.com, and if you click on the "Hope" category, you'll see our journey with her.

Thanks for sharing your story. I also learned of your blog thru Nate Loizeaux. I'll be tracking with you and praying... and PLEASE, if you need anything in the Philly area, let me know. We have lots of connections there.

Thanks for sharing your story. I found your blog through Danielle's and will join with the others in praying for your two little angels. It is so hard as a mother because we want to protect our little ones and control everything so that they are safe and healthy, but they truly are a gift from God and he holds them in his hands - a much better place to be than our own. You have my prayers.

your faith in the Lord Almighty is so strong and powerful, you have brought me to tears. we are praying for you, your husband and the two little blessings. thank you for sharing your story. sending lots of love, hugs and prayers!

I have met Danielle just this year and she has blessed my life with her friendship and heart in so many ways.

Today I am so happy that she blessed me by sending me to you. I THANK you for sharing your story and for allowing us all to travel it with you. You will be in my heart daily and if there's ANYTHING I can do for you please let me know.

I will pray for you and our husband and your two baby girls. I know that God loves you because you have faith in HIM, he is with you and your girls. I thought just today, if God can form a mountain, how easily he must be able to form a tiny human inside the womb. Your little girls will be warriors.

We are wishing your two little princesses the best. You made the right decision as parents. They both deserve a chance. 32 weeks will be here before you know it. I have a close friend who was in a similar situation but with only one sac. She delivered them at 31the weeks and they are 2 years old now. We will pray for little ones.

I found your blog through Take Heart. I'm praying for you and your twins. God is bigger than all this, and he's got you in His hand. I don't doubt that he can give you the strength and peace to deal with whatever happens. Praise God that you know Him, and have such hope! Love Bec

Carolyn and Jordan~I wish that I had so much more time to write! But I have 2 little 1-year-olds that make it kind of hard :) I received this link and you don't know me but your story is much like ours and I want you to know God has the most perfect plan. This has been the most trying year for my husband and me BUT God has done countless miracles and has been with us in each step. I don't have our story posted on a blog, but I do have a document of all of the emails that I sent after our weekly MFM appointments. I remember reading MANY stories on my 12 weeks of bed rest. I would urge you to contact the TTTS Foundation or get pluged into their website. I know SIUGR is a bit different as we experienced that too. But I went on bed rest immediately after our 16 week appointment diagnosis and started the protein drink supplement. That is definitely something that is proactive. You sound like you are learning so much and your faith is your DEFINITE foundation! You are your babies' strongest advocate. My email is elren079@comcast.net if you need ANYTHING at all. It sometimes feels like you are alone and like you said you've never met a baby under 7lbs...but there are many of us with many stories and you are definitely in my prayers! Praise God for choosing LIFE and leaving your precious babies in His hands. Bless you! Lauren

Brianna told me today about your precious babies and encouraged me to read your blog. You are an amazing woman and will be an amazing mom. Please keep me posted as to when you deliver the babies. I do a lot of volunteer work with the March of Dimes and know the Family Support Specialist at the NIC U, Amanda as well as some of the Ambassador moms that are part of the support program through my work with March of Dimes. I know you will be well cared for but I will reach out and let them know how special you are. I will pray for you, your husband and your daughters. Joanne DiMarco